This blog is about my life dealing with multiple digestive problems and feeding tubes. But it is also about my life in general, being married to M, working as a psychologist, having fun, being happy, and living life to its fullest no matter what.

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Friday, January 28, 2011

Went to see my family physician. Luckily, I didn't need to wait, I was actually the first to be there. Before my doctor did a dipstick urine analysis she already commented on the nasty appearance of my urine.
So, yes I have one bad UTI. I have to take antibiotics for five days, got strong pain meds, and some probiotics to hopefully ward off the diarrhea that I always get with taking antibiotics.

I am home on the couch now, medicated :-), and sipping "bladder and kidney tea".

Unfortunately, every time I get sick, my intestinal system shuts down even more. So glad for my j-tube right now....

I am in pain. And I have to wait for four more hours until my family physician has office hours. She usually has office hours from 11 AM to 4 PM, but today of all days she will not be in until 6 PM - and only for urgent cases.

I am an urgent case today.
I had a burning sensation when I went to use the bathroom last night after we came home from dancing. During the night I woke up in pain and nauseated. This morning I already had blood in my urine. Still, I went to work, thinking that it would distract me from feeling like crap. Got more nauseated there, took Zofran, turned down my tube feeding rate, at 12.30 in addition to the blood I have pus in my urine.

Sigh.

So far I have no fever, but I hardly ever get a fever anyway. The thing is, I know I have to drink more, but I don't want to, as I will have to go pee more and peeing is so painful....

What really makes me mad though is, that I will have to take antibiotics, and antibiotics and I don't get along at all. I always get nauseated really badly, get diarrhea, and yeast infections. It takes me forever to recover from antibiotics and I really need to be able to keep my tube feeding rate up in order to not continue to lose weight. I am really worried if I have to take antibiotics that I won't be able to feed as well.

I will try to nap in order to make the time go by quicker.... I wish it was 6 PM already....

Wednesday, January 26, 2011

Today I am tired. Ever since our trip to the spa I have been fighting off a cold. In hindsight it would have been better if I had blow-dried my hair before driving home. I am not sick yet, but it is lingering with a runny nose, headaches, and fatigue.

I actually went home from work an hour early, as my headache was so bad that I was starting to feel nauseous. Now I am kind of waiting around until it's a decent time to finally go to bed.

Yesterday I met with one of my friends for some tea after work, and she commented on how much weight I had lost. She said one can really tell by looking at my face and arms. Obviously, I have seen it myself that I have lost weight, but I don't own scales and with working full-time I had no time to see my dietician to get weighed. With all my GI problems it was to be expected, but it makes me really sad that I lost a big part of the weight that I worked so hard to gain in the past two years. With my malabsorption problems I am not an easy gainer at all, and it takes quite some time and lots of calories to gain weight for me.

My dietician always says that we don't really need scales to track our weight and that clothes are a really good marker to use. So I got out a pair of pants that I bought last summer when I was at my highest weight to be able to better assess my weight loss.
This is the result:

It makes me so sad to see this for several reasons. First, I really loved my more curvy self. Second, I had way more energy and I was able to go running several times a week (I have not gone running in four months), and third, M and I want to try getting pregnant this year, and my OBGYN told me that the TTC (time to conceive) is a lot less if I have a BMI above 20, and also women below a BMI of 20 need to gain so much more weight during pregnancy.
Logically, I also know that I can't pregnant as long as I am not physically stable and have shown that I can get my rate up high enough to gain weight.

Sunday, January 23, 2011

Yesterday morning when I got up I decided I wanted to do something special with M this weekend. For months I spent my weekends sleeping and resting in order to be able to go to work during the week. I am still tired, but I am starting to have a bit more energy.

I wanted to do something special, but nothing that would exhaust me, and I had a brilliant idea.

I got down our beach towels and bathing suits, packed our bag and off we went to Vienna's very own hot springs. The "Therme Vienna" has just been renovated and we had heard that it was supposed to be really beautiful.

I brought my waistpack with my pump and food and only hooked off for being in the water. There is one pool that was really cool. It was outside, so we had to run through the cold (in our bathing suits and barefoot) to get to it. The pool itself was heated to a really nice temperature. Its water had a really high salt content enabling us to float on our backs and there was underwater music that you could listen to (if your ears were in the water). It was so relaxing!!!!

Friday, January 21, 2011

Two neuro rehab patients were assigned to me this week. I have had them both for neuropsych testing first, so they already knew me.

Mr. B. is a 55 year old immigrant from Croatia who is recovering from his second stroke that left him wheelchair-bound (at least for now), with an impaired spatial ability, and with a slight residual hemispatial neglect for the left side (a deficit in attention to and awareness of the left side of space - always contralateral to the lesion).

Mr. E. is an 83 year old banker recovering from a small stroke, who is now suffering from memory problems.

Today I realized that being me - my positive, happy, charming and lovely self - might have more effect on my patient's wellbeing than any neuro training I can offer.
Yes, I can work with them on their memory and spatial ability, but it doesn't replace my kindness and compassion that I have for them.

Tuesday, January 18, 2011

I am coming to a point in my internship when it's time to start applying for the second round. Unfortunately, the hospitals here in Vienna have a regulation where you can only do a maximum of 6 months of internship. Then I would have to wait for three months before I could do the last three months that I need. This applies to almost all of the hospitals in Vienna.

Obviously, I can't afford to not work for three months, and now I have to either find an internship in a non-hospital setting or a in a hospital around Vienna.

I have been so worried about it, knowing that I do have to explain that I am a tube feeder not knowing how they will react to it.

So, I talked to my boss today about it. I wanted to have his intake as a boss and as my boss on my situation. I love being a psychologist so much that I worry that my gastroparesis and tube feeding will cause someone to not hire me.
He was so kind! He reminded me that being a tube feeder has nothing to do with my qualities as a psychologist. It does not hinder me in my work at all, and he doesn't even notice my waist pack anymore. He is amazed at the positivity and optimism that I display and how well I deal with everything that is going on.

So I guess it's just me who sometimes thinks that being a tube feeding psychologist means that I am worth less than any other psychologist.

Sunday, January 16, 2011

After working 40 hours last week (and still recuperating from all my GI problems) I was so exhausted on Saturday that I spent all day on the couch with various cats cuddling with me sleeping, reading, and of course tube feeding.

Today, on the other hand, I felt a bit more productive and decided to tackle the apartment. M has been cleaning in the past month, and even though he does a very good job, I definitely have different standards when it comes to cleanliness and cleaning. I vacuumed, scrubbed the floors, ironed, cleaned the kitchen and bathroom, and tidied up some drawers in the living room.

Now, I am off to soak in the bathtub in my very clean bathroom and then watch last Thursday's Grey's anatomy episode :-).

Thursday, January 13, 2011

Today I got to do something really exciting at work.
Maybe some you might not think of it as exciting, but rather gross.

Every Thursday afternoon our chief of neurology, who also is a neuropathologist, does brain autopsies. Today I got to participate together with my boss and watch him dissect brains. Yes, it was a bit gross at first, but interesting nevertheless.

The second brain he dissected was of a woman who died following a massive stroke. I have only ever seen strokes on CT and MRI scans, it was so amazing to see the damage done in a "real brain".

Unfortunately I had not calculated my formula correctly and my food ran out in the middle of the autopsy. Of course I did not bring a syringe for flushing my tube, so we had to leave early. (I have a 9 FR J-tube so flushing is really, really important to keep it open.)

Tuesday, January 11, 2011

I took some more photos of my CamelBak waistpack turned tube feeding waistpack:

This is my feeding bag.

I then put the bag into the back pocket of the CamelBak waistpack.

Inside the pack I have to fold my bag over like this (I have a 1500 ml bag).

I then add my pump to the front part of the pouch.

Arranging the tubing.

The CamelBak has two openings - one of the left one of the right - where the tubing can be put through.

Connecting to my feeding tube.

Ready to go.

My pump is a European model - a Fresenius Kabi Applix Vision. Comparing my bags to the (new) Zevex bags - I would think that this set-up would work for the Infinity pump as well. The new bags have an anti-roll flange flap on the bottom - the same that I have in my bags.

Monday, January 10, 2011

All I did was casually mentioning to my boss that I was put on 24-hour-feeds, but I did not say anymore about my waistpack etc. It was a bit embarassing as I wasn't as careful with the arranging of the bag and pump inside the pack and had a few occlusion alarms as a result due to kinking my tubing. It happened during morning rounds and several times while talking with my boss. But then I got it all figured out, rearranged the bag and pump and had no more problems afterwards.

None of the doctors or nurses commented on it, they most likely didn't even notice it :-).

I am beat tonight :-). I am still not up to my full amount of tube feeding formula, and working all day and then rushing off to the hairdressers :-) really exhausted me. Planning on a nice warm bath and then off to bed with my Kindle to read.

There is only one down-thing to today. We were informed during morning rounds that we have a noro-virus outbreak on the left ward (we are the psychologists for two wards - the "left" and the "right"). My boss looked at me and told me to stay away from the left ward, as he knows that catching a virus like this could be detrimental to my health.

Later on we (us three psychologists) all decided that we will not treat and examine patients from the left ward until the noro-virus outbreak has cleared. I will be doing lots of handwashing in the next few days...

Sunday, January 9, 2011

Tomorrow is my first day of work as full-time tube feeder. I have got my CamelBak waistpack all set and ready to go and tried it out in my clinical psychology class the past two days - works perfectly, and I feel a lot more independent than with my backpack. With the backpack, when I was sitting down, I always had to pick it up and put in on my back when getting up. With the waistpack I just get up like everyone else :-).

My boss was on christmas vacation for the past three weeks and so I have not been able to tell him yet what has been going on. At first I thought I should inform him right away that unfortunately I now have to feed at work too. But now I have decided to not make a big deal out of it at all. I will keep my waistpack on, put my white coat on, make sure that none of the tubing shows, and go down to participate in morning rounds just like I did before. If I had i.e. broken my leg during christmas and returned to work using crutches, I wouldn't try to apologize for having to use crutches at work either. I have on idea why I keep thinking that I have to apologize for being a tube feeder.

Yes, doctors, nurses, and patients might look and ask questions, but there is nothing I have to be ashamed of.

Friday, January 7, 2011

Being on 24-h-tube feeds mean having to tube feed during work as well. I usually always use backpacks (various backpacks that I have adapted as tube feeding backpacks) when out and about and during the day at home as well, only during the night I use my IV pole. I just cannot see myself working as a psychologist at the hospital, wearing my white coat with my backpack on the back and my tubing sticking out.

There is a waistpack available for my pump and giving set, but my insurance doesn't pay for it, it's really expensive, and above all judging by the pics, it doesn't look like they have adapted the design since the early 90ies.

I decided to look around online and then I came across the CamelBak Flashflo 45 Oz hydration waist pack, the hydration bag can be taken out and since it's used for hydration it already has holes in the bag for tubing to go through.

I received the waistpack today, put my bag and pump in, and for the very first time did not have to do any adaptations - it was ready to go!

Wednesday, January 5, 2011

I spent the day on the couch recouperating and the cats took turns to cuddle with me. M lovingly took care of me - this is definitely a benefit to him having home office.

I have four days of classes coming up for my clinical psychology program. M originally didn't want me to go, but after some pleading and a lot of promises on my side that I'd call him if I felt sick and that I'd lie down immediately after coming home, he agreed to let me participate. Of course I know that staying on the couch would be better for me, but I have to take those classes in order to get my degree.

I have been doing really well on my clear liquid diet. I am still trying to have "meals" at mealtime - tea for breakfast, chicken broth for lunch and dinner etc. and that makes me feel like I am still eating like everyone else. I have been hooked up non-stop since yesterday 11 AM, and so far no reflux of formula into my stomach.

I actually feel really relieved to be on clear liquids right now. I always try so hard to push oral foods, partially because I want to show everyone that I am trying really hard to eat and that this has nothing to do with me having been anorexic years ago. Not having to eat right now actually takes a lot of stress out of the situation and I have been nausea free since yesterday. M oversees the increasal of my flow rate, as I tend to be ambitious and tend to want too much too fast. Therefore, I am still at 50 ml/h until probably Friday. (Unless I can convince him otherwise :-).)

I was taken down to endoscopy around 9.30. Talked briefly to my GI doc there before he sedated me. The next thing I hear was him telling me that the tube is positioned perfectly and that he will come by shortly to talk to me.

When he walked into my room, I apoligized to him for making such a big fuss, but since I had formula in my stomach I honestly thought that my tube must have migrated back up again (like it did before). He was very kind and explained to me that I have severe motility issues - not only in my stomach, but also in my small intestines as well, and anytime I tried my flow rate up to 80 ml/h it started backing up into my stomach. My GP just added to the pain and nausea.

We also talked about the possibility of him trying a straight PEJ again at some point, but honestly, for now, there is not even a point in having a button-type PEJ, as I have been put on 24 h tube feeds.

So yes, I am now on a clear liquid diet with 24 h tube feeds. At the moment I am on 50 ml/h, and I am tolerating that well. I am to increase my flow rate very, very slowly.

I got released from the hospital yesterday afternoon, and I am now recouperating at home on my couch with the cats curled up around me. I am supposed to be in class from Thursday to Sunday from my clinical psychology program, and I can't really miss it, but if M takes me there and picks me up, I think I can still do it. After all, I will only be sitting around all day.

I am a bit nervous about the prospect of returning to work this time as a full-time tube feeder, but if I want to get and feel better, this is what I have to do.

I am obviously elated that my tube is staying down, however, I am a sad to realize that I not only have gastric but also intestinal dysmotility.

Monday, January 3, 2011

I started to feel really sick Sunday morning, couldn't eat orally anything at all anymore and had a hard time keeping myself hydrated. Started to take Zofran ODT every four hours too to keep the nausea at bay. I really wanted to go to next emergency room and have someone just pull the j-line out, so I can finally feel a bit better. But my family (including M) thought that I needed to wait it out and have my GI doc see for himself how badly the tube is placed now.

Come Monday morning, and I was feeling very dehydrated and shaky. M took me to my family physician's office who hooked me up to some IV fluids. I texted my GI doc if he could admit me today. By the time the first 500 ml were in, my GI doc had texted back that a bed was waiting for me and I could come right in.

I am getting IV zofran and fluids and am counting down the hours to tomorrow morning when he can (hopefully) fix the tube situation.

Sunday, January 2, 2011

I have only been posting about my tube troubles lately, but to top it off I kind of had a touch of bad luck over the past few weeks. Apparently mercury was in retrograde - not that I really believe this astro stuff, but apparently all the things that have been going wrong are very typical for mercury in retrograde :-).

Let me tell you about all my non-tube related "misfortunes":

15th of December - I broke off a part of a dental inlay - estimated costs € 380

18th of December - I lost my Ipod nano (I must have dropped it outside our car and someone took it) - that really hurt - I love my Ipod for all the train rides I take to and from work - if I want a new one - I'll have to pay € 160

22th of December - I lost my brandnew starbucks thermo mug :-(

And to top it off:

yesterday: I wanted to read my book on my Kindle in bed last night, switched it on, and the screen broke.... I honestly couldn't believe it - my brandnew Kindle!!!! broken !!!!

I sent an e-mail to amazon's customer service center, got a reply this morning when I got up with the invitation to phone them for further help. A phone call to a really nice customer service agent later, and my Kindle replacement is on its way, estimated date of delivery - Jan 5th to 7th - all the way to Austria in only 3-5 days. I have to send mine back, but they will even refund me for the postal charges :-).

Saturday, January 1, 2011

I went back to work on Thursday. Maybe not the wisest choice, as I was still feeling a bit weak and exhausted, but as I am the only psychologist on duty until the 9th of January I felt obligated to go back to work. Thursday night when I went to sleep my tube was still working fine. During the night I kept waking up feeling sick and burping up formula. Knowing what that means, I checked my stomach in the morning and was able to vent tube feeding formula from my stomach. I was (and still am) devastated. This time my tube was even longer than the last time and according to my GI doc it was positioned really well. Still, it only took two days for it to migrate back into my stomach.

My GI doc is on vacation until the 10th of Jan., but I still texted him asking if he could tell me whom to call if the j-portion inside my stomach was starting to bother me more and make me feel sick (as it usually does). He texted back to say that he could reposition the tube on Tuesday. I talked to my dietician who thinks it makes absolutely no sense to keep repositioning the tubes. I therefore texted him again asking if he could maybe try the PEJ again, but I received no answer.

It's hard for me to put into words what I feel. I am scared because I know that no matter what tube we used it won't stay down. The tube that I have in now, was the last resort through the stomach j-tube, everyone believed that it was just the buttons that wouldn't stay down, but this tube was supposed to stay in place.

When I saw my new GI doc for the first time, he said that having retroflexing j-tubes certainly points to a motility problem. It really scares me to think that this is what's happening.

About Me

I have chronic digestive problems (gastroparesis, exocrine pancreatic insufficieny, malabsorption, histamine intolerance, fructose malabsorption, lactose intolerance, and multiple pollen associated food allergies).
When I received a nasogastric feeding tube in December 2008 for supplemental night time feedings my fiance and I came up with the stories of "Tube Girl" - my superwoman alter ego who saves the world from starvation in order to put a bit of fun into having an ng-tube.
After six long months of ng tube feeding I received a g-tube at the end of May '09. Check out the posts labeled "The story so far" for more information.
As of July 2010 I have to rely on a semi-elemental formula for malabsorption issues. Fall 2010 - finally had my g-button converted to a gj-button.
Update Dec 2010 - because the gj-buttons wouldn't stay put, I had PEG/J put in with a pigtail for fixation in the jejunum.
Update Jan 2011 - diagnosed with intestinal dysmotility issues. Update Aug 2011 - PEJ placed.